Psychology Notes
2000-Seattle
James May, from Fathers Network: Said the trick is the "Find the
Balance" in a family with a disability, and to let good times
balance the bad. Definition of a family: "A group of people who
make an irrational commitment to each other's well being to the
point of making each other crazy" - Urie Brunfnebrenner. He said
that we need to see our family as a mobile and keep it in balance
or it will collapse, just like a mobile. It can be readjusted but will
never go back to the previous shape. He showed a cartoon of a
street sweeper with a man running in front of it and said that is
how a lot of us feel.
A family with a disability does not have to be a dysfunctional
family. Males tend to want to "FIX" a situation, rather than feel
guilty about it. Families experience guilt, anger, disappointment,
helplessness, and resentment. We need to talk about the
problem, not just the impact it is making on relationships.
Families organize to handle problems, but find it difficult to
change. A chronic illness (ongoing health problem) may become
a family member, and act as a "two year old terrorist",
"An ENERGIZED FAMILY talks a lot, establishes community ties
(as in coming to a conference), encourages the autonomy of
family members, is capable of creative problem solving, utilizing
family's skills, and has the ability to adjust to changes within the
family" PRATT
He asked "What are YOU teaching your child about PERSONAL
independence?"
He said that knowledge is power, and that we need to educate
our doctors, do not make enemies, and become our own expert.
Pain deadens the soul. There is power in perception and in
attitude. We should surround ourselves with SUPPORT. Do not
try to "go it alone." "What we give others is what we need
ourselves." Gerald Jampolsky "MAKE PEACE WITH
IMPERFECTIONS" Richard Carlson
2003-San Jose
Debbie Gish - A social worker can support (NOTES Cont) and
provide tools for dealing with differences. We have experiential
expertise. We are teachers about differences and teachers
about Stickler syndrome. We are educators - some are like
inheriting a family business (we don’t like it, don’t want it, but
are there). We can be willing teachers. IF you see another
person’s heart, you do not notice their differences.
She talked about Civil Inattention. We all need to be noticed, but
not differentially.
We all naturally give each other a correct lack of attention. The
obviously disabled are denied that. They get curiosity
questions, rude questions and overly personal questions. We
have to develop greater patience and understanding of those
reacting to our differences. The secondary reaction, on both
parts, is the most important interaction. Smile, give simple
replies to questions.
With visible differences, the condition is immediately obvious.
With non-visible differences, a decision must be made to tell or
not, face rejection or gossip. We want support, but not
judgment. Your honesty can teach a better reaction for another
person’s next encounter.
Tools: Work toward ease of relationships. Know that Stickler
syndrome is part of your life, not all of your life. Rehearse
responses and anticipate questions. Talk within family, but do
not become “Joe Stickler-syndrome Jones”. Realize that
everyone is different. Pick your battles; play up your assets.
Get help (therapy) for fears. Include children in decision
making. Learn firmness and self-advocacy, not anger and rage.
2004-Chicgo
Dr Ginny Wright, Clinical Psychologist
Some adults speak with disrespect or with dismay, when
referring to teens. They jump into “what is wrong” rather that
what is normal. She presented a chart of normals at the varying
stages of teens. They have intense friendships, love and hate.
As adults of a chronic child, we may assume their disability is
the cause of slights. But, it is normal.
It is exhausting to hear “you do not understand.” To the teen, it
means we do not get it. To the adult, it means you do not agree.
Adolescence, thru 9th grade is most difficult, even for “normal”
families.
With chronic illness, the body image concerns
magnify, along with concerns that medicine or treatments will
make teens MORE different. Be open to them talking about it.
Do not say “it will be OK”. That shuts down communications.
Say “what happened that makes you say that?” “I bet you did
not even know your felt that way.” “I had not thought about that,
but you have a point.” Some chronically ill persons are afraid of
independence. We must foster independence, in limits of safety.
Gone are the days of secrets or “white lies.” Face the truth
together.
Emotions are contagious. Talk with honesty and facts. It is hard
to say “I do not know.” Relationships with peers are a chronic
problems, especially if the teen is away from school often.
Prepare the teen for anything, by using a sense of humor.
Listen to how they describe siblings, as it will give you an idea
of what they think of themselves.
This is a FAST growth period, second only to infancy. We are
just not as awed. Studies have shown that chronically ill
children have a greater self-confidence, a better relationship
with parents and better verbal communication skills. The same
child is more isolated, more aware of feeling abandoned or
stigmatized, fears dying, dependency , loss of control and
expressing anger.
Illnesses cause the negatives of “Why” and “What is the
future?”
Illness causes filters in the view of life. In any
adversity, if there is one close parent, buffering is phenomenal.
Parents offer control and optimism. It is human nature to try to
take away the bad, but with a chronic illness, one can probably
only add well.
2006- Omaha
Dr Colleen Conoley, Neuropsychiatrist: For an assessment, she
obtains history and current status, family and social information
, medical and educational information, routines, and
interventions tried. People are referred to her for
 Difficulty in learning, attention, behavior, socializations or
emotional control
 A disease or inborn developmental problem that affects the
brain in several ways
 A brain injury from an accident, from birth, from trauma or
from physical stress
She assesses 1) general intelligence, 2) Achievement skills, 3)
Attention with executive functioning, 3) Learning and memory,
4) language skills, 5) sensory and sensory / motor skills, 6)
motor skills, 7) behavioral and emotional functioning, and 8)
social skills.
RESULTS may be:
Educational planning
Base line and progress monitoring
Medical treatment
Parents are the expert on their child, and a good teacher is a
secondary expert. It is very important to develop a method to
measure success.
1. What are our goals?
2. How do we know if it is working?
3. What is a reasonable time?
4. What are the risks versus the rewards?
Goals need to be:
 Meaning filled to parent and to child
 Have a benefit to daily functioning
 Relevant to daily functioning
 Related to a time line (when should we try something else?)
She noted there is a difference between medical autism and
educational autism.
She referred us to http://www.quackwatch.org/
2007-Rochester-Mayo Clinic
Dr. Philip Fischer-Adolescent Adjustments - said that Dr Stickler
took care of the whole child. Zebra disorders, in the medical
world, are rare and unusual disorders. Drs are taught to look for
a horse when they hear goof beats, but it could be a zebra.
He advised us to take care of the child and the condition will
“come along“.
He listed 10 ways to help a child merge into adulthood:
10) Find a “medical home”- a place of medical care, where a
team focuses on the patient;
9) Get immunizations
(www.cdc.gove/vaccines/regs/schedules/defautl.htm is the latest
information on required shots;
8) Be safe- no trampolines yes-bike helmets, car seats and seat
belts;
7) Get Check-ups -eye, general health, and any other follow ups.
6) Be positive - -Be confident- do not confuse the diagnosis with
the person. Use a positive nickname for the child; Brag about
the child and let them hear you rag. Give them identity and
independence.
5) focus on function, focus on abilities, not disabilities; Ask
“what’s on the schedule for today”, not “how do you feel?”; Ask
“what did you do today?”, not “how was school?”
4) Accept autonomy; we have not cloned our children; “to an
adolescent, there is nothing in the world more embarrassing
than a parent.”
3) Support living, not a disability; Make it about ability and ease,
not disability and disease. Do not wait for the light at the end of
the tunnel, stride down there and light the bloody switch.
2) Keep a big view -See the future, but do not be overwhelmed.
Picture a Fitness Center with an escalator, take one step at a
time, not the escalator;
1) Have fun- Make mistakes so you can learn from them.